I just returned from spending a day with the team working on the Collaborative Chronic Care Network (C3N) who are part of the amazing ImproveCareNow (ICN) network of clinics as well as some very creative visionaries building the Anderson Center of the Cincinnati Children’s hospital.
ICN/C3N is focused on helping the families of children with Crohn’s disease or other IBS/IBD diseases like Ulcerative Colitis. In recent years the team has focused on improving care delivery by showing how a network of centers can systematically improve care delivery by being disciplined in measuring and sharing outcome data. They actively seek to translate learnings from over and under performing centers or sub-populations to change care delivery across the network and effect a shift in the mean outcome curve for chronic disease.
More to the point, they are actually implementing the data collection, cross-institutional transparency and systems processes we all talk about.ICN has shown what can be accomplished by applying good organizational leadership and making proper use of patient data in the clinical environment. In a forthcoming publication they will be sharing some startling results showing significant improvement in remission rates across the network of clinical centers in the ICN without introducing any new drugs. In fact, they’ve reduced the amount of patients receiving systemic steroids while providing these improved outcomes.
I was brainstorming with them yesterday about their next major project which aims to move their data collection and continuous improvement process into the patient’s home. They want to apply the N:1 trial model patient families to identify regimes of care that can improve the subjective as well as objective outcomes for patients. They are actively looking at the key questions of engagement, burnout, habituation, instrumentation, etc that will be central to making the quantified self movement mainstream.
They also are applying a very interesting model to patient outcomes by viewing them through the lense of statistical process control (a disciplined that emerged in modeling factory performance). They apply a remarkably simple method of visually representing history such that you can show that a change in behavior is significantly outside the typical variation of the untreated case, thus helping both the doctor and patient see that a given intervention is providing legitimate improvement.
For a wide variety of problems this strategy of continuous exploration and optimization can be a far more rapid, useful and cost-effective tool than the randomized controlled trial. For those of us interesting in self-experimentation, novel models of scientific discovery and improved care delivery C3N is a project to watch closely.
Frumious Abstractions 
Ian, your summary of what’s going on at the C3N and ImproveCareNow is an effective summary of an inspiring collaboration. My own involvement with these organizations tells me that they are seeking to learn from each patient and clinician, neither population of which is particularly well-equipped with the means to comprehend what is going on with individual cases, much less whole populations. The objective of the C3N, in particular, is to design and build interventions whose objective is a subtle but powerful transformation of the way healthcare is experienced, one that does not rely overmuch on new (and often expensive) therapies or, even government action. Instead what is needed are patients and clinicians willing to put the time and energy into solving the healthcare problems they encounter every day, by joining a movement of like-minded individuals.